Words

We all have a ridiculous amount of power available to us the second we wake up in the morning and engage our lips.

The words we choose to say are important. They aren’t just letters and numbers in a particular order to be found in the Oxford English Dictionary. They are so compelling they can force a reaction from another person. Whether it’s convincing them to buy the latest mobile phone, start a new course of medication, listen to a new band’s single, or persuade them they are useless. Words are the foundations on which we build every wonderful AND terrible moment.

On the face of it, this post seems like someone being incredibly anal about the conversations they’ve been party to. Yes, I accept that I take things too literally and overthink what’s been said to an unhealthy degree. I’m a weirdo. But that doesn’t mean the words I received were right, came across in the intended way, were properly considered or that they should have been said at all. In many cases, I’ve had words thrown at me that were damaging whereas, if thought over properly, they’d have created little to no damage at all. They may have even been received positively.

This is something that forms part of every crevice of our life. A conversation gets you a new friend, buys you a coffee, greets you in the morning, asks you on a date, tells you you’re going to be parents, congratulates you on a birthday, consoles you when you’re bereaved and talks you down from the edge of crisis. It doesn’t matter what you’re trying to achieve, even the life of an isolated nomad requires some internal dialogue.

So what happens when the chatter is painful?

In part, I’m hopeful this post will help others understand why isolation becomes necessary for people like me. I’m acutely aware I have no control over the words of others, but I’m also acutely aware that those words could plunge me into a panic attack or crisis situation in the blink of an eye. About 2 years ago that meant I had to avoid those chats completely. Friends, family, neighbours, professionals and even the postman were placed on my DNC (do not converse) list. It didn’t take long for my paranoia to sprout, and I found myself sitting in this same spot having to mute my music to listen to the conversations strangers were having on the street outside. My paranoia convinced me these people, people I didn’t even know, must be saying something horrifying about me. Obviously it’s always been untrue, but my mind is alarmingly nifty at convincing me it’s happening.

Why have I become so paranoid about something so essential to daily life?

I’ve had some bad experiences in unlikley circumstances and I thought it might be useful to hear them (in basic form) to make it understandable how the slippery slope starts, and how hard it is to get off again.

1. Healthcare Professionals

I won’t regurgitate the conversation attempts with NHS staff who wouldn’t make room for my Tourettes, and I also won’t talk in full about the staff who were rude when I stuttered and hung up when I couldn’t get my words out. Yes, not talking can be hurtful too.

But I will talk about Doctors who choose to ignore, forget or disbelieve the situation I’m in and make my fear of society seem like something I’m useless for not being able to overcome. My circumstances make it difficult for me to engage with health services in a normal way, but in utter exhaustion at my continuing symptoms, a doctor recently advised me that if I continue to experience them then I’ll ‘just have to call 999 because there’s no other way to get help’. Realistically if I call an ambulance when I have these episodes then I run the very real risk of being told to go to hospital, meeting people I don’t know and becoming dangerously paranoid over how I’ll cope with all of it. In short, I could never do it.

Frustratingly, this is a doctor I’d spent years trusting and working with, but one day they decided to stop trying to help and unexpectedly reduced me to tears when they offered me one impossible solution to a problem I’m incredibly worried about. A solution that they knew someone suffering with acute agoraphobia would never ever choose.

When they heard me crying (after talking AT me for a few minutes, making it clear that no other help than an ambulance would be offered) they asked “What’s happened?”, and for the first time in my history with this GP, I had to hang up.

Those 2 simple words – what’s happened – made my red blood cells bubble instantly. They must have known how damaging the offer of no help at all would be, but when they heard me sobbing they acted surprised.

I started to convulse, I couldn’t breathe, the world was closing in on me. What will she say next? What if her comments get worse? Where will I get help? How will I control these symptoms? What if my pain keeps getting worse? Who can I trust? Who do I contact when I need help now?

Panic.

This happened weeks ago, but the paranoia and fear it caused still rises in me today. Thankfully my partner didn’t accept this ‘solution’, and an alternative GP offered other ideas and plenty of understanding words too,

• 2. Friends

Before my social circle completey evaporated I did keep in touch with a couple of people who had alot going on personally. I wanted to try and be supportive through that difficult section of their lives. It wasn’t a tit-for-tat situation – these were people who were in and out of our lives when my partner and I were going through the stress of multiple bereavements. At the time I thought that may have been for reasons they couldn’t discuss and I just chalked it up as more friendhsip losses – they were becoming frequent and I was adept at dealing with it.

But a couple of us gradually started reopening the lines of communication, I knew from their stories that they needed mates. Regardless of the past, I made a choice to be one of them. In all cases I’d offer my thoughts and advice regardless of what was going on in my life because I believe that’s what friendship is all about.

I have no idea what happened, but somewhere along the line things changed and suddenly the words I said became irrelevant. My mental illness and bereavements were things I still needed support with, but I felt ignored when I got no response when talking about the weight of grief. Similar things happened when my health declined, and even when I had good news. All of this while I continued to offer my support regardless.

And with those events bundled into things that were said in the past, I realised that words (even absent words) were still painful for me. That meant only one thing – those handful of friendships ended.

These are friendships and conversations I miss. There’s a huge value to support networks, it’s something I advocate regularly, but for me, when those support networks are flimsy they’re more damaging than helpful.

For the record, I realise that virtual friends come and go, but their words can resonate just as deeply and often still result in a very positive or negative reaction for me.

• 3. My daughter

This example is probably where you’ll start understanding that this isn’t just a paranoid, overreacting person. This is an illness in control.

It’s well documented our daughter is on the spectrum, and it’s well documented that her ability to communicate has only really started chugging in the last year. Before that she was technically mute with the odd word said but never in the right context. Until nearly 5 she said nothing at all.

So surely words from her shouldn’t carry as much gravity. The pain can be covered in cotton wool because it’s just a kid, right?

Erm, no.

Panic has now happened twice because of something she said that felt hurtful.

First she told me I was ‘rubbish’. The inevitable ‘I hate you’ for asking if she was ok after she fell over in the living room. After repeating these few words she ran to Daddy – a common response as he is favourite.

Simple sentences said by a kid looking for attention, but in a world where I only talk to her and her dad almost all week every week, they resonate deeply. The person I love more than anything or anyone says she hates me. It’s incredibly hard for me not to react to that negatively.

Who feels pain at the words of their 6 year old child?

I do.

• 4. My partner

Poor bastard. He really puts up with a lot, and manages things beautifully in difficult circumstances, but he still makes mindless comments that cut my insides. They aren’t deliberate, but like I said before, that doesn’t make my hurt invalid.

I struggle to look in the mirror these days. My self-confidence is low and has been for some time, especially after gaining some weight. So when I buy new clothes I use my partner as the mirror, rather than judging my reflection negatively with my paranoid glasses on.

In the summer a dress arrived, a nice floral number that, for someone who wears black 24/7, was a huge break from the norm. I was starting to feel engulfed by the blackness and flowers felt good. I threw it on over a pair of spanx, and the dress was light and floaty, not revealing any lumps or bumps.

My partner loved it, instantly letting out a ‘Wow!’, because colour is so unusual for me. I did the usual twirl, pulling the fabric around and highlighting the parts of the colour and pattern I liked. As I was getting ready to walk away and pop it in the wardrobe he made a comment in passing that ruined it all…

“You know, you might be happier with a cardigan on, Babe.”.

This is a reaction to my arms being on show, arms that I regard as flabby and disgusting. His comment was meant to help my confidence by hiding something he knows I dislike. It had nothing to do with how he felt. I know, deep down, he’d walk along the street with me in only the Spanx given the opportunity. He’s not ashamed of me. The trouble is I’m ashamed of myself, so that comment translated in my head as the things I hate.

I’m fat and ugly.

I can write this now and make a reasoned argument about what happened on both sides and I can fully translate and accept why those words were said and NOTHING damaging was ever meant.

But if it happened again I’d go on the same woeful journey of hatred towards us both.

As I say, poor bastard.

In conclusion

Yes, words might seem like an odd thing to find damaging, complaining about them might seem like an excuse or the easy way to explain away complex mental illnesses. But the reality is that your words today may have changed someones life negatively or positively. We can all leave someone feeling hopeless, loved-up, unworthy, accepted, useless, valued, ugly, sexy, stupid or educated. Those letters formed to groups and announced in such rhythmic pleasure have enormous power even to change politics and process.

Imagine how different things would be right now without the phrase “Brexit means brexit.”. Might seem like a politically led jab at Bojo, it’s not – I didn’t vote on this decision. But realistically, if those 3 simple words hadn’t been publicly voiced, we’d have a different political outlook today. Certainly less than 500 Prime Ministers in a year.

Words are literally everything.

The Picture

How do you artistically depict a post about words? I asked myself this question multiple times over several weeks whilst editing this post (yes, they really can take that long!).

In the end I chose this illustration of the red panda, MeiMei, from the Disney Pixar film Turning Red. This is a film I watched recently with our daughter. It was the first film she watched from end to end, and I could see she was utterly engrossed by it. I’m using it to convey 2 things.

1. This is a movie packed with complicated language that, only a year ago, she wouldn’t have understood or engaged with. Despite the delay in her development and difficulty understanding English, she followed the story with ease, even remembering the name of the lead character and some words from the theme song. We talked about the way her mum showed Mei love, and the similarities to our relationship too (in simple terms).
2. In response to her loving the film, I got her the accompanying board book to continue encouraging her love of reading. Unbelievably, she opened the book and pretended to read it to me, relaying what she remembered from the film to make it look like she was truly translating the words. Her brain is as cunning as my paranoia!

If an autistic child with limited language can get that much motivation from a film with a storyline that other kids might find more complex, then the positive power of words becomes relatable and believable for me.

Unlike my understanding of politics.

Thanks for reading 💜